Is Asperger’s syndrome/High-Functioning Autism necessarily a disability?
Simon Baron-Cohen
Departments of Experimental Psychology and Psychiatry,
University of Cambridge
Invited submission for Special Millennium Issue of Developmental and Psychopathology Draft: 5th January 2000
Acknowledgements: I am grateful to Bridget Lindley, David Andrews, Liane Holliday-Willey, Chris Wilson, Temple Grandin and Therese Jolliffe, for discussion of these ideas. David Andrews can be credited for having introduced this topic at an early point, whilst Uta Frith and Franky Happe can be credited for their influential notion of "cognitive style". Finally, Dante Cicchetti and Alan Sroufe provided excellent editorial advice.
Abstract

This article considers whether Asperger Syndrome (AS) or high-functioning autism (HFA) necessarily lead to disability or whether AS/HFA simply lead to "difference". It concludes that the term "difference" in relation to AS/HFA is a more neutral, value-free, and fairer deion than terms such as "impairment", "deficiency" or "disability"; that the term "disability" only applies to the lower functioning cases of autism; but that the term "disability" may need to be retained for AS/HFA as long as the legal framework only provides financial and other support for individuals with a disability. Two models are summarized which attempt to define in what way individuals with AS/HFA are "different": the central coherence model, and the folk psychology-folk physics model. The challenge for research is to test the value of such models and to precisely characterise the differences in cognitive style.
We have grown familiar with the idea that autism is a "psychiatric condition", a "disorder", a "disability" or a "handicap". Ever since Kanner"s deion of the "aloneness" of these children , psychiatry has labelled and categorised them as abnormal, ill, and deficient. Through the changing definitions of autism enshrined in successive editions of both DSM (Diagnostic and Statistical Manual, published by the American Psychiatric Association) or ICD (International Classification of Diseases, published by the World Health Organisation), we have had a single view of autism thrust upon us: an essentially negative view in which children or adults with autism are characterised as "impaired" .
This article challenges the received view through a subtle but important shift of emphasis. Rather than conceiving of autism as a deficiency, it instead considers if autism might be better characterised as a different cognitive style. This important idea can be traced to Uta Frith"s book , and has been recently discussed in relation to "central coherence" theory , but deserves a fuller discussion because of the massive implications of this shift of emphasis. Using the term "different" rather than "deficient" may seem unimportant (after all, both words begin with "d", end in "t" and have 7 letters in between). But this small shift could mean the difference between whether the diagnosis of autism is received as a family tragedy, akin to being told that the child has some other severe, life-long illness like diabetes or haemophilia, or whether the diagnosis of autism is received as interesting information, akin to being told that the child is right or left-handed. In this millennium special issue of Development and Psychopathology, the intention is to highlight this as an issue for the agenda.
Asperger"s syndrome (AS) and High-Functioning Autism (HFA)
Autism is diagnosed on the basis of abnormalities in the areas of social development, communicative development, and imagination, together with marked repetitive or obsessional behaviour or unusual, narrow interests . Individuals with autism may have an IQ at any level. By convention, if an individual with autism has an IQ in the normal range (or above), they are said to have "high-functioning autism" (HFA). If an individual meets all of the criteria for HFA except communicative abnormality/history of language delay, they are said to have Asperger"s syndrome (AS). In this paper, we focus on AS and HFA since we accept that an individual who is lower-functioning necessarily has a disability in the form of retardation. What is not clear, and therefore the subject of the debate presented next, is whether individuals with AS/HFA necessarily have a disability. For the present purposes, we consider the arguments in relation to AS and HFA, without attempting to draw any distinction between these.
The arguments for viewing AS/HFA as a difference rather than a disability
1. The child spends more time involved with s and physical systems than with people (Swettenham et al., 1998);
2. The child communicates less than other children do;
3. The child tends to follow their own desires and beliefs rather than paying attention to, or being easily influenced by, others’ desires and beliefs (Baron- Cohen, Leslie & Frith, 1985);
4. The child shows relatively little interest in what the social group is doing, or being a part of it (Bowler, 1992; Lord, 1984);
5. The child has strong, persistent[2] interests;
6. The child is very accurate at perceiving the details of information (Plaisted, O"Riordan & Baron-Cohen, 1998a; Plaisted, O"Riordan & Baron-Cohen, 1998b)
7. The child notices and recalls things other people may not (Frith, 1989);
8. The child’s view of what is relevant and important in a situation may not coincide with others (Frith, 1989);
9. (dates, . The child may be fascinated by patterned material, be it visual (shapes), numeric timetables), alphanumeric (number plates), or lists (of cars, songs, etc.);
10. The child may be fascinated by systems, be they simple (light switches, water taps), a little more complex (weather fronts), or abstract (mathematics);
11. The child may have a strong drive to collect categories of s (e.g., bottletops, train maps), or categories of information (types of lizard, types of rock, types of fabric, etc.); and
12. The child has a strong preference for experiences that are controllable rather than unpredictable.
The list could be expanded but these 12 behavioural features are sufficient to illustrate that children with AS/HFA are different in ways that can be described in value-free terms: none imply any necessary disability. Rather, most of the above facts show the child as immersed in the world of things rather than people. This might be a basic way of defining the difference between a person with an autism spectrum condition and one without it .
Being more -focused than people-focused is clearly only a disability in an environment that expects everyone to be social. But a moment"s reflection highlights the injustice of this expectation. Thus, people who show the opposite pattern (of being more people-focused than -focused) are not necessarily considered disabled. On this view, people with AS/HFA would cease to be disabled as soon as society"s expectations change. For example, a child with AS/HFA who prefers to stay in the classroom poring over encyclopaedias and rock collections during break-time, when other children are outside playing together, could simply be seen as different, not disabled. It is not clear why the child with AS/HFA is seen as doing something less valuable than the other children or why their behaviour should be seen as an index of impairment.
Equally, a child with AS/HFA who has strong narrow interests of an unusual nature (learning the names of every kind of bird) may be different to a typical child who has only been interested to learn the names of common animals. But surely the narrow deep knowledge is no less valuable than the broad, shallower variety, and certainly not a necessary index of deficit? A final example should help drive this point home. Just because a child with AS/HFA notices the unique numbers on lamp-posts which the rest of us are unaware of, does this make him impaired? We could say it is simply different. The same argument can be applied to all of the other facts listed above.
II. The neurobiology of AS/HFA is not better or worse than in typical development.
AS/HFA involves a range of neural differences. A full review of these is beyond the scope of this article, but the reader can consult other excellent summaries . In some regions of the brain increased cell density has been found , - for example, in the limbic system - whilst in other regions of the brain structures are reported to be smaller. For example, the cerebellar vermis lobule 7 and the posterior section of the corpus callosum have both been reported to be reduced in size in autism. However, whilst these neural abnormalities signal differences between brains of people with and without AS/HFA, they cannot be taken as evidence that one type of brain is better or worse than the other.
Similarly, AS/HFA appears to be strongly familial, implying a genetic aetiology, and the first report from an international molecular genetic consortium study reported a linkage on Chromosome 7 in affected individuals . The molecular genetic basis of AS/HFA remains to be worked out in detail, but again such findings are at best evidence of difference and in no way implies that the genotype of AS/HFA is deficient.
III. "Difference" avoids value-laden judgements
Many features of AS/HFA may be redescribed in ways that are more neutral, in terms of AS/HFA comprising a different "cognitive style", with no implication that this is better or worse than a non-autistic cognitive style . For example, the AS/HFA cognitive style may be described as being more -oriented, and more focused on detail. Another change in terminology is that the term "autistic spectrum disorders" is being replaced by the term "autistic spectrum conditions". Like the term "cognitive style", this avoids the possibly pejorative associations of the term "disorder", though it may be questioned whether even using the term "condition" is an appropriate medicalizing of an individual"s cognitive style. But the spirit of such changes in terminology is clear. It is possible to describe AS/HFA in value-free ways.
IV. The difference view is more compatible with the "continuum" concept
A further argument for favouring the difference view over the disability view is that it is easier to accommodate within the now widely accepted notion that autism appears on a continuum . The notion of a continuum assumes that there is an underlying dimension or set of dimensions along which all people vary. There is still debate over precisely what constitutes the underlying dimension. Later in the paper we consider two models which aim to characterise the autistic spectrum.
Arguments for viewing AS/HFA as a disability rather than a difference
1. Differences are caused by cognitive deficits
The obvious first rejoinder to the difference argument is that children with AS/HFA show differences precisely because they are disabled, impaired, suffer cognitive deficits, etc. Thus, one might argue that they are less influenced by others because they do not spontaneously stop to consider other people"s points of view, feelings and thoughts (the theory of mind deficit) ; they may communicate less and may be less socially focused for the same reason; their unusual perception may arise because of their "weak" central coherence ; whilst their strong interests may reflect a "failure" to switch attention flexibly, possibly as a sign of their "executive disorder" . For all these reasons, the rejoinder goes, we should retain the notion of AS/HFA as a disability.
This could be regarded as unfair because there may be a chicken-and-egg problem in the logic. We cannot yet prove that their difference is due to a disability and not the other way around. For example, is their "mindblindness" the cause of them being less socially-focused/more -focused, or a consequence of it? The development of a mind-reading skill may require months of social input so a lack of early social interest could contribute to mindblindness. One could make a similar case in relation to their weak central coherence: Is this a cause of their relatively greater interest in detail , or simply a consequence of it?
2. Lack of social interest reflects disability
Here is a second argument for seeing AS/HFA as a disability: the absence of a behaviour may itself reflect a disability in that area. In this case, the lack of normal sociability or communication is seen as a sign of disability. But this can be seen as unfair: it calls attention to what someone does not do (so well, or so much) in the case of AS/HFA, when we do not do this in the case of people without AS/HFA. For example, I do not spend much, if any, time thinking about mathematics problems, but I spend quite a lot of time thinking about people. In contrast, the person in the next door office spends a lot of time thinking about mathematics problems, and hardly any thinking about people. Yet I do not describe myself as having a disability in mathematics. I would instead say that I simply prefer to spend time thinking about people: they are more interesting to me. To call what a person does little of a disability could be seen as unreasonable. It might be a little like saying that the basketball player Michael Jordan has a deficit in fine motor coordination on the grounds that he is not known for spending much (if any) time engaged in needlework. This may be true of him, but to highlight this aspect of his skills, whilst ignoring his obvious assets in hand-eye coordination, physical speed, strength, agility, etc., is to put things back to front, and would be an unfair deion of him.
3. AS/HFA is a disability when viewed from the family or peer perspective
One might argue that AS/HFA is a disability when viewed from the perspective and needs of their family and the wider social groups, (e.g. school, peers, etc.). Parents may be at their wits end over the extreme behaviours their child shows. For example, the child may insist that the living room light should be on whilst the hallway light should be off, that the plug switches should all be in the "up" position, and just certain taps should be on, etc. . Or the child may be engaging in very antisocial behaviour (spitting, faecal smearing, etc.). Quite reasonably, parents, teachers, peers and others should not have to put up with such a tyrannical, strong will on the part of their child, or with antisocial behaviour, since they as parents, teachers, or peers also have needs.
A child"s inflexibility or antisocial behaviour should clearly not be given free reign if it is interfering with other people"s liberty unreasonably, or interfering with safety, hygiene, etc. Help with parenting may be needed, to facilitate the child accommodating to others, and vice-versa. But this is still not a clear justification for calling AS/HFA a disability - it is no more justified than a woman saying her husband is disabled simply because his hobby is dominating her life unreasonably, or saying that your neighbour is disabled simply because his behaviour interferes with your privacy. Individuals clearly need to accommodate to each other, since there may be a clash of interests or styles, but is one disabled? Not necessarily. .